NeuroTalk Support Groups - Went to Urgent care for the breathing thing

Quote:

Originally Posted by en bloc (Post 1154676)

Both (and only) people I know with PH also have Sjogren's and neuropathy.

I have Sjogren's, ganglionitis, PN, and severe autonomic neuropathy...along with another autoimmune condition called APS (antiphospholipid syndrome). It was considered at one time that I might have pulmonary hypertension and I went through some of the basic testing for it. Thankfully, it was determined that my shortness of breath during exertion is due to my severe autonomic dysfunction, not PH.

I don't know your history, so pardon me for asking questions you may have already answered on other posts. Do you have symptoms of Sjogren's...if so, what are they? Does your daughter have the same symptoms?

Have you been tested for Sjogren's (labs for SSA & SSB)? Or lip biopsy?

Did you neuropathy start first or the symptoms of Sjogren's? Have you had a skin biopsy to confirm SFN?

Frankly, I think you need to see BOTH a cardiologist and pulmonologist (working together). You need a full cardiac work-up as well as PFT (pulmonary function tests).

As for both of you coming down with this at the same time, are you referring to just the livedo or ALL the symptoms? If all, then a toxic element must be considered IMO. I know AI diseases have a genetic connection, but for both to be triggered at the same time is odd.

I have dry eyes, muscle pain, joint pain (with out swelling), terrible brain fog in the beginning, and then a whole load of symptoms that come with neuropathy and autonomic problems.
I was diagnosed with sfn by skin biopsy NLD, autonomic problems from tilt table, and high ANA. sjogrens itself didnt show up in blood work and lip biopsy had lymphocyte infiltrates, but was borderline.

As far as my daughter goes, I am referring to the livedo as well as some foot pain that she describes as electric shocky feeling in her pinky toe when she puts it on the floor to take a step, and 2 episodes of big toe muscle weakness/ vibrating and pain. The big toe is back to normal now and the pinky toe shock is much less intense.
She also is getting frequent headaches, having some insomnia and is extremely agitated. These were all my beginning symptoms. The neuropathy in my feet would come and go and I just dealt with it and assumed it was nothing. If it weren't for the livedo on her, I would have just thought her foot stuff was coincidental and nothing to worry about.